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The Reading Room

Book Review: Understanding Health Inequalities and Justice

11 Jul, 17 | by amcfarlane

Understanding Health Inequalities and Justice: New Conversations Across the Disciplines by M Buchbinder, M Rivkin-Fish and RL Walker (eds). Chapel Hill, NC: University of North Carolina Press, 2016, 320 pages, £37.50.

Reviewed by Professor John Harrington, Cardiff University

Inequality has returned to the political agenda in Europe and North America in the aftermath of the financial collapse of 2008 and the austerity programmes which followed it. The paradoxical success in failure of Bernie Sanders and Jeremy Corbyn in US and British elections respectively marks this shift. The long decades of neo-liberal hegemony, which privileged supply-side ethics and economics over the redistribution of resources, have come to an end. Instructed by scholars such as Thomas Piketty and challenged by the Occupy movement, parties of the right and the so-called centre left now accept that a direct concern with remedying inequality is essential to sustaining the legitimacy of the capitalist order. Contemporary health policy and politics are no exception. Persistent inequality in access to care and in health outcomes, exacerbated it is claimed by austerity regimes, track patterns of social exclusion and historic disadvantage associated with gender, race, geographic location and citizenship-status. While policymaking and research on health inequalities and injustice is of longstanding, they have gained urgency in the present conjuncture.

This collection is timely therefore, containing engaging and fresh interventions on the connections between health inequality and justice from scholars working in ethics, anthropology, history of science and health policy studies. Its aim is not only to provoke reflection on how we define and address health inequalities and inequities, but also to contribute at the level of methodology, highlighting the analytical strengths, but also the blindspots of the different disciplines in their engagement with these questions. But it does much more than simply line up perspectives one alongside the other. Lively interdisciplinary dialogues are ‘staged’ within individual chapters themselves. Paul Brodwin’s essay on mental health, for example, showcases the possibility for a productive interaction between the first-person testimony of survivors and abstract work on the ethics of recognition. In a respectful reading he shows how each approach can complement the other. Personal accounts indicate the dynamic nature of the quest for respect and intersubjective recognition by former patients, while theory can clarify the values which are often simply assumed by personal accounts. His hopeful conjugation of two different genres stands in contrast to the hermeneutics of suspicion which suffuses the encounter between disciplines evident in other chapters. Thus, Eva Feder Kittay uses ethnographic accounts to challenge the assumption in law and policy that all patients exercise their autonomy to the same extent and in the same way. Her use of personal narrative here allows the reader to go deep and wide: identifying the influence of historic discrimination and location within networks of support on the ability of different individuals to behave ‘autonomously’ in accessing and benefitting from health care.

It is a notable strength of the book that the interdisciplinary conversation signalled in its subtitle is also carried on across chapters, as well as within them. Thus, Kittay’s review is augmented by the theoretical platform developed by Janet Shim and colleagues in their own critique of the ‘Patient-Centred Care’ model which has underpinned recent US health reforms. Building on the work of Pierre Bourdieu, they argue that clinical encounters are shaped by the specific ‘cultural health capital’ available to each party. This repertoire of communication skills, educational attainment, deportment and etiquette is itself unequally distributed among patients, leading to correspondingly varied attitudes and interventions on the part of their doctors.

The salience of such pre-conscious attributes (or ‘habitus’) is taken up in relation to the oral health of Mexican migrants to the US by Sarah Horton and Judith C. Barker. Drawing on extensive ethnographic work they show the enduring influence of limited access to dental work on the health and broader social prospects of the children of undocumented workers. Detailed stories of women prevented from breastfeeding by their employment conditions and the efforts made by children and young adults to hide or remedy defects make vivid the insight which several contributors borrow from Nancy Krieger, writing elsewhere, that inequality is embodied. The critique of formal autonomy is extended by Janet De Bruin and colleagues in their chapter on conceptions of risk in pregnancy, which shows how legal measures and media discourses about maternal responsibility, claimed to be based on neutral empirical studies, are in fact deeply shaped by culture and prejudice. This provides empirical substance for a critical ethical review of policy with reference to the six essential heads of well-being set out by Madison Powers and Ruth Faden in their theory of social justice and health.

The chapters discussed are animated by faith in the capacity of interdisciplinary approaches to produce new perspectives on the nature and ethical significance of health inequalities, even if their conclusions are often pessimistic in substance. Nicholas King is a notable exception to this, warning of the perils of ‘cross-disciplinary’ cherry picking which lead to easy but not wholly justifiable policy recommendations. His immediate target is the widely held view that reducing social inequalities will lead to improvements in health. That position, he argues, confuses the undeniable association of poverty and ill health, with the existence of a causal relationship between them, which has not by and large been proven. He suspects philosophers and social scientists of wilfully or carelessly paying insufficient attention to the limits of epidemiological findings and assuming their objective and value-free character in order to strengthen their own normative position. This argumentative sleight of hand will be found out, he suspects. Better to be honest and stake a direct claim for combatting social injustice, regardless of its (unproven) effect on health. This is a wise counsel, though King might have augmented it by adopting the contextualizing methods on display elsewhere in the book. A more historically-informed reading would suggest that the desire to ground interventions in ostensibly neutral studies concerning health effects is consonant with the dominance of evidence-based policymaking, and the more insidious compulsion to defer open debates on distribution and equality both typical of neo-liberalism.

The problem of causation also troubles Paula Braveman in her opening contribution to the book. She accepts that the term ‘health inequities’ gains its specific rhetorical force from the attendant notion that such disparities can be traced to unfair social structures. Like King, she accepts that this causal flow is hard to prove. Like him she wishes to avoid pinning the case for active intervention to meet health needs to this element, arguing instead that bare health inequalities are themselves of ethical significance in so far as they compound pre-existing unfairness. State responsibility to act in such cases can be based on the normative repertoire of international human rights law, and in particular its strong injunction against discrimination and its focus on remediating the position of disadvantaged groups. This is indeed a plausible reading of human rights law, though one wonders at the extent of its likely political traction in the US, which has not of course ratified the International Covenant on Economic, Social and Cultural Rights, central in this context.

State obligations are a key focus of Jennifer Prah Ruger’s chapter, which is the only one to engage directly with questions of global health justice. Based on a careful blending of governance studies and theories of justice she sees an important role for the nation state, which had previously been somewhat overlooked in the global health literature. The state is conceived of here as an indispensable lever for addressing health inequalities as between populations in different parts of the world. This is a wholly instrumental characterization. The state’s contribution is defined only in categorical and functional terms, circumscribed by universally binding standards of justice themselves based on the rights and responsibilities of individuals. No attention is paid to the historical specificity of different states, and particularly those in the global south which are the focus of most global health efforts in practice. As medical anthropologists and historians of science have shown, the work of independent states in health as in other social sectors was oriented by the aspiration for development and emancipation from the effects of colonialism widely shared among their citizens. Of course, in many cases this aspiration was bitterly disappointed. But states remain nonetheless the objects of desires and concerns which exceed the merely instrumental.

Ruger also demonstrates the power of the capabilities approach in orienting studies of health justice domestically and globally. Its emphasis on the protection and promotion of agency is a theme taken up implicitly and explicitly by many other contributors from different disciplines. Indeed, the detailed ethnographic studies and closely-read patient testimonies, as well as the critical engagement with popular discourses around pregnancy and migrant health rights, offer us wide ranging evidence of the ceaseless struggle to secure patient autonomy and health justice. Structural determinants, arising out of economic and legal constraints, as well as conscious bias and inherited disadvantage mean that health agency is almost always realized in ‘tight corners’. This crisply edited, well-constructed collection deserves our praise for directing our attention ‘up’ to the level of critical ethics, and ‘down’ to the messy world of practice and in forcing us to reflect on the often problematic, but sometimes enriching and productive relationship between the two.

Book Review: No Apparent Distress

27 Jun, 17 | by amcfarlane

No Apparent Distress: A Doctor’s Coming-of-Age on the Front Lines of American Medicine by Rachel Pearson, New York: W.W. Norton, 2017, 272 pages, £21.99.

Reviewed by John Coulehan, Stony Brook University, NY

Was there a time before memoirs of medical training became a popular genre of nonfiction?  It’s difficult now to imagine a time before aspiring young physician-writers frequently turned their attention to the slings and arrows of outrageous—but also often sublime—medical education. Intern by Doctor X, one of the earliest first-hand accounts of  hospital training, appeared in 1965. Its lurid description of life in a teaching hospital forced the author to remain anonymous, but the book was eagerly consumed by the public, whose appetite for these stories has grown and multiplied over the ensuing decades. Soon additional memoirs began to appear, and a new genre, the medical bildungsroman, was born. Today Amazon and Barnes & Noble offer dozens of books featuring the personal stories of young physicians. Some of these, like Danielle Ofri’s Singular Intimacies or Atul Gawande’s Complications, are first rate literature; others are merely workmanlike. Some focus mostly on the writer’s internal struggle or character formation; others are explicit in their critique of depersonalization, overuse of technology, or injustice in American medical care.

The plots of medical bildungsromans are pretty standard: an idealistic student enters the maelstrom of medical school or residency training, overcomes obstacles, gains practical wisdom and survives, determined to become an altruistic and humane physician, despite external constraints, like deficiencies in the health care system. Some physician-writers are able to combine these generic ingredients into compelling and provocative stories. To do so requires freshness of insight, a talent for vivid storytelling, and a distinctive voice.

Rachel Pearson’s No Apparent Distress displays all of these qualities in good measure. Dr. Pearson graduated from the University of Texas at Galveston in a combined MD-PhD program, with her PhD in Medical Humanities . The book’s title is an ironic reflection on the traditional medical shorthand, “The patient is in no apparent distress,” or shorter still, the chart entry, “NAD.” As Dr. Pearson makes apparent, there is in fact a great deal of distress among students, physicians, patients, and in the American health care system as a whole.

Aside from the author herself, the book’s  most significant character is St. Vincent House, the site of a student-run free clinic for indigent and uninsured patients. Over 25% of Texans were uninsured in 2008. For those in Galveston, St. Vincent’s (with the motto, “All Are Welcome Here”) was virtually the only available safety net. Rachel began working in the clinic  from her first days in Galveston and continued throughout medical school, eventually serving as a student director. Thus, much of No Apparent Distress is devoted to her education at St. Vincent, which included in-depth learning about the social and cultural context of medicine, and the glaring inequities in American health care. The publisher’s flyer describes No Apparent Distress as “a searing indictment of America’s health care system.” I would not call the book “searing.” Yet, it’s compassionate and hopeful stories of struggling patients teach the reader much more about injustice than searing rhetoric could.

Take the example of Mrs. Klein, who appeared at St. Vincent’s with a large abdominal mass that had been growing for three years.  Dr. Pearson recounts her difficult, but successful, attempt to enlist faculty volunteers to biopsy the mass, interpret the slides, and eventually obtain coverage for Mrs. Klein in Galveston’s indigent care program, allowing her to undergo surgery. Although this entire process required eight months, it was doubly successful because the mass turned out to be benign. Meanwhile, the author describes her experience with the “luxury medicine” that took place nearby, a month long rotation with Doctor Houston whose internal medicine practice featured cosmetic Botox injections, laser hair removal, and “electrode” treatment for diabetic foot pain. This contrast between uninsured and luxury medicine highlights the irony of “no apparent distress.”

Another major theme of the book is uncertainty and error as experienced by a physician-in-training. Like many physicians, Dr. Pearson vividly  remembers her first significant medical error. When evaluating a St. Vincent’s patient, she forgot to report abnormal urinalysis findings to her preceptor. This, in turn, led to an incorrect diagnosis. Several months later the patient was found to be suffering from terminal kidney cancer. The author agonizes over her personal responsibility for the delay in his diagnosis (as I think most conscientious students and physicians would), even though it’s difficult to see how a single urinalysis result would have made a difference to the outcome.

Dr. Pearson relates a number of other instances of hesitation, error, awkwardness, and confusion as she progresses through medical school. As I noted earlier, these are all standard student responses, as are the array of hostile, difficult, engaging, and grateful patients. What makes No Apparent Distress stand out is the author’s ability to bring her feelings and these characters to life. She also has a distinctive voice, an attractive mixture of naiveté, passion, sharpness, and common sense that hooks the reader and makes him keep turning pages. Finally, this memoir is unusual in its focus on efforts to care for the uninsured patient as an integral part of medical education.

No Apparent Distress carries the subtitle, “A Doctor’s Coming-of-Age on the Front Lines of American Medicine.”  This is unfortunate because it evokes the hackneyed war metaphor that the author strongly condemns as contributing to the inhumanity of contemporary American health care. Fighting, battles, front lines—we need less of this violence and more of the caring that Dr. Pearson actually prescribes. So forget the subtitle, but read the book, which is a notable contribution to the medical bildungsroman.

Book Review: Balint Matters

20 Jun, 17 | by amcfarlane

Balint Matters: Psychosomatics and the Art of Assessment by Jonathan Sklar, London: Karnac, 2017, 254 pages, £27.99.

Reviewed by Dr Neil Vickers.

Michael Balint is mentioned in medical humanities circles as a revered ancestor, much as one might talk about William Empson as a significant figure in the history of English literary criticism. Everyone knows they’re important but surprisingly few people read either writer today or even know why they should. (An important exception is Josie Billington’s superb Is Literature Healthy? – reviewed here – which devotes a chapter to Balint.) Empson did theory before Theory, and Balint did narrative medicine before Narrative Medicine. Both men were at least as interesting as what came after them and yet both have become unduly sepia-tinted with the passage of time. Part of the reason for this fading in Balint’s case has to do with the fact that his clinical examples are firmly rooted in the sociological reality of the 1940s and 50s. The world Balint describes is hidebound by class. As a psychoanalytically-minded medical humanist, I occasionally press a copy of Balint’s classic, The Doctor, the Patient and the Illness (1957) on M.Sc students, but always with the caveat about his antiquated case material. ‘Someone should update it,’ I whisper, as they saunter out of the room.

Now someone has updated it. In his new book, Balint Matters, Jonathan Sklar, psychiatrist, psychoanalyst and leader of Balint groups (as well as a leading scholar of Ferenczi’s thinking) has produced a masterly summary of the Balint technique, along with a history of Michael Balint’s contribution to the theory of the doctor-patient relationship in collaboration with his wife, Enid. The second half of the book, entitled ‘Assessment’, which I won’t discuss here could be published as a volume in its own right. Assessing a patient for psychodynamic treatment is a topic on which surprisingly little has been written.

Michael Balint was born Mihály Bergsmann in Budapest in 1896. His parents were descendants of German-Jewish families who had been in Hungary for only two or three generations. (This German-Jewish world of Leopoldstadt is described in a wonderful series of autobiographical interviews that Georg Lukacs gave towards the end of his life, published as Gelebtes Denken). In 1916, young Mihály took the momentous decision to abandon Judaism in the hope of eluding the anti-Semitism that was still rife in Austro-Hungary and changed his name to Bálint (which means ‘Valentine’ in Magyar). He first came into contact with psychoanalytic ideas while a medical student in Budapest. His fellow-medical student and first wife, Alice Szekely-Kovacs, was one of Sándor Ferenczi’s analytic patients. Balint himself held off from having analysis with Ferenczi at first, and following the overthrow of the Hungarian Soviet Republic (which had bestowed a public professorship of psychoanalysis on Ferenczi, a world first) Michael and Alice fled to Berlin in 1919 to train as analysts at the Berlin Psychoanalytic Institute, where both had analysis with Hans Sachs, and where Michael did a PhD in chemistry and physics. The couple went back to Budapest in 1924 and became patients, colleagues and friends of Ferenczi. Balint became Ferenczi’s literary executor and the chief exponent of his thinking in the international psychoanalytic movement for decades. If the rediscovery of Ferenczi has reinforced the air of ‘always the bridesmaid, never the bride’ hanging over Balint, so has the explosion of interest in Winnicott, with whom he has so much in common.

Balint’s main contributions lie in two areas: psychosomatics, understood holistically as the study of the relationship between mental and physical disturbances; and the uses of therapeutic regression, which he explored in his other great book, The Basic Fault (1967). Sklar’s concern is with the first and specifically with the work Balint developed at the Tavistock Clinic in the 1940s and 50s with his third wife, Enid (Alice having died shortly after they arrived in England, to escape the Anschluss). Balint focused his attention on how the doctor’s attitudes and approach affected the course of an illness, and suggested that ‘the most frequently used drug in general practice was the doctor himself, i.e. it was not only the bottle of medicine or the box of pills that mattered, but the way the doctor gave them to his patient—in fact, the whole atmosphere in which the drug was given and taken.’

Sklar offers a number of clinical vignettes from Balint groups he has facilitated, describing how this works in practice. These case histories for me formed the heart of the book. I won’t spoil the reader’s pleasure by describing too many of them but among those that stood out for me was the case of a 70-year-old woman who was addicted to dihydrocodeine, a strong opioid analgesic. The woman had complained of a pain in the hip but a scan revealed only minor osteoarthritis. Her condition never seemed to improve. She made occasional visits to a cousin who lived far away and would ask her doctor for a bumper supply of painkillers to get her through. Then, much against the patient’s will, her daughter visited the GP and told her that her mother never went to see a cousin, and that the story was just a ruse to get more prescription opioids. The GP was appalled to realise that in the course of the previous year she had prescribed more than 3,000 dihydrocodeine tablets to this woman. In discussion with the group, the GP realised she knew nothing about her patient’s history. With a bit of help from Sklar, the group discussion included the following ideas: 1) the patient had an addictive relationship to the doctor; 2) the doctor felt depressed on behalf of the patient; 3) the doctor was unconsciously acting as a container for aspects of her patient’s mind, perhaps playing the part of a distant depressed mother, who gave her daughter ‘the wrong medicine.’ Feeling, noticing and understanding these projections didn’t cure the patient but they did give her doctor more freedom in the way she related to her. Addiction could now be seen as a way of representing early childhood deprivation.

Balint groups have also been used with psychiatrists. Sklar is fascinating on the attempts by some trainees to use Balint groups as a covert form of personal analysis. This arises not least because of the peculiar pressures of working with severely disturbed patients. The kinds of problems many of the trainee psychiatrists brought had to do with the ways in which they were made to carry aspects of their patients’ mental disturbances. Again, to pull out just one example, Sklar describes the case of a young psychiatrist, Dr L, overwhelmed by the suicide of a male patient who had been admitted at his mother’s request, shortly after the latter’s recent remarriage. Dr L bitterly regretted not administering ECT. Perhaps it would have saved him? She was also worried about the effect of the suicide on the other patients on the ward where the man was being treated. The nurses had suggested that a community ward meeting should be convened to break the news. The group listened to Dr L’s anxieties and asked for information about the patient’s history. It turned out that his biological father had killed himself by electrocution. Sklar asked how the ward meeting had gone. It had been fine for the most part though a psychotic woman had to be removed. This woman had told the meeting she was the angel of death and that there would be more deaths. Somewhat to the group’s surprise, Sklar observed that the psychotic woman had voiced what was in effect Dr L’s own worst fear about herself. Here was an instance of the need to listen to the very mad, as barometers of the most split-off emotions in the room. The psychotic woman had been excluded because she was voicing the emotions that were most unacceptable to the group. Dr L then remembered that her patient had killed himself on his mother’s birthday and that her recent marriage was to an electrician. These snippets, combined with the knowledge of the patient’s father’s suicide, shed new light on the hopes she had placed in ECT. They amounted to a re-enactment of the patient’s deep upset over his father’s suicide and at the same time offered a means to shut out and ignore the meaning of the mother’s marriage to an electrician. As a result of this meeting, Dr L softened down her until-then vigorously-asserted opinions about psychiatry’s exclusively organic basis.

For me, the most moving chapter in the book describes Sklar’s work in the early 2000s at a hospital in an unnamed city in South Africa. In 2007, it was estimated that nearly 6 million South Africans had HIV or AIDS, or 12 per cent of the population. This was overwhelming to the medical professions attempting to offer treatment at a time when antiretrovirals were beyond most people’s reach. Thabo Mbeki’s refusal to believe that HIV had anything to do with AIDS licensed widespread denial of the natural history of the disease and its behavioural causes. Of course, the doctors knew how AIDS was commonly transmitted but the overwhelming nature of the incidence of the disease and the need to shield families from stigma meant that patients were often treated as if they were just medically irrelevant dying people. The doctors for whom Sklar acted as a Balint facilitator told him of their anger at the way AIDS patients were treated as undeserving and subhuman. But they also described the primitive fears the disease evoked in the workplace. The whole practice of medicine was at risk of becoming warped by the cultural phantasies surrounding it.

Sklar’s book deserves to be read by anyone who wants to know how to listen to patients with an analytic ear, how to understand the dilemmas of clinical practice analytically, or why psychoanalysis still has so much to offer physical medicine. As his title makes clear, Balint matters, particularly in an environment where doctors and patients are urged to forget about the whole person and focus instead on gross symptoms and quick fixes. As a result of his endeavours, it should be easy for most readers to imagine a Balintian response to many clinical dilemmas. It is even possible that this brilliant exposition of Balint’s thought will initiate a new phase in the reception of this underrated and very fertile thinker, and bring about further extensions of the Balint model of the kind Sklar himself has achieved here.

Book Review: Eros and Illness

13 Jun, 17 | by amcfarlane

Eros and Illness by David B. Morris, Cambridge: Harvard University Press, 2017, 368 pages, £31.95.

Review by George Derk, PhD (gtd2gu@virginia.edu)

With the provocative pairing in the title of his new book, David Morris sets himself the task of dramatically altering the perceived relation between these two terms. As he contends, there exists less of an opposition and more of an affinity between them than we are usually willing to admit. At times, they even seem like bedfellows rather than rivals: “eros and illness both usually send us under the bedcovers” (27). Professor Emeritus of English at the University of Virginia, Morris began his academic career focusing on eighteenth-century literature before turning his attention to the medical humanities. In some ways this new book is a follow-up to and an elaboration of a couple of his previous ones, including The Culture of Pain (1991) and Illness and Culture in the Postmodern Age (1998), but at least one significant difference sets this recent work apart from the rest. Morris draws from his personal experience as caregiver for his wife, Ruth, after she was diagnosed with early-onset Alzheimer’s. It is this model of care, where provider and patient are the most intimate of partners, that allows Morris to explore the neglected dimension of eros in illness.

Morris begins by developing a capacious interpretation of eros, one that cannot be reduced to sexual activity nor to the Roman equivalent of Cupid. He instead derives his understanding of the concept from both the French philosopher Georges Bataille and the Canadian poet Anne Carson, and while he carefully stipulates that eros resists any easy definition, the word that comes closest to naming it is desire. He proceeds with a thorough examination of desire in the context of health care—or what he calls “medical eros”—mostly through illness narratives and doctors’ memoirs. He occasionally supplements these primary texts with analysis of literature and the other arts, as when he discusses the waiting involved in caregiving as akin to the waiting depicted in Samuel Beckett’s most famous play, or as when he finds an affirmation of eros in a series of nude portraits that Amedeo Modigliani painted while suffering from a terminal illness in wartime Paris. What he eventually uncovers amounts to an alternative medical genealogy, a recovery of the ancient figure of Asklepios as the embodiment of the obscured tradition of eros in Western health care. For Morris, the dominant stature of the other ancient healer, Hippocrates, and what he represents—biomedicine, or what Morris terms “medical logos”—has resulted in a reduction of the pluralism of healing practices, inhibiting the effectiveness of treatment for chronic illness.

From a certain angle, the book falls into a recognizable pattern of decrying how science-based, data-driven medicine has lost sight of its core humanistic principles, which I suspect would prompt many health care professionals to respond that the realities and demands of the job only allow for so much empathy and compassion. However familiar Morris’s argument may sound, the frequency with which medical logos runs up against its own limits warrants reiteration. If medical eros seems like some New-Agey solution to the problems of modern health care, it does a lot more good than some of the other reactions, such as over-treatment, that occur when doctors confront uncertainty or a lack of options. Perhaps the more insightful and original contribution of this book, though, is less its appeal to humanize medicine and more its belief that anyone can learn how to care for those who fall ill. Indeed, as Morris suggests with his own transformation from English professor to fulltime caregiver, the innate capacity to provide humane care stems from the eros that one already bestows onto his or her loved ones. The relative absence of Ruth’s story further underscores that this book chronicles the experience of illness not from the perspective of the patient but from that of the caregiver, although at times the boundary blurs. Morris himself becomes a patient after suffering a heart attack, which he attributes to the stress of providing care and which he takes as an example of a “supradyadic effect,” or how one’s health is interdependent on the health of those in one’s social network.

The book, overall, reads like part Bildungsroman of a caregiver and part philosophical treatise on the nature of caregiving. Morris strives to preserve the desire that drew him to Ruth in the first place and sustained them through three decades of marriage. In the face of regret at not recognizing Ruth’s symptoms earlier, guilt for his irritability towards Ruth’s increasing debility, and, most of all, anguish at the terrible inverse logic of dementia (“she was fading emotionally, just when I felt in greatest need of her ordinarily loving expressiveness”), Morris maintains that eros doesn’t necessarily have to evaporate altogether and may actually serve as the greatest resource when medical logos has no answers (39). Along with the personal experiences that he relates, the case for eros is strongest when grounded in specific instances wherein biomedicine finds itself ill-equipped. Morris’s inclusion of the writings from people with non-normative identities—such as the African-American, lesbian poet Audre Lorde who claims in The Cancer Journals (1980) that the “love of women healed me”—proves particularly effective in this regard. Dwelling on the accounts from those at the margins testifies to the potential of medical eros to help remedy the imbalance of treatment for underserved communities. In addition to the benefits made available by eros, the cost of not acknowledging its contributions equates to an egregious oversight. Morris cites an estimate by the American Association of Retired Persons that within the U.S. 36-38 million family caregivers provide $350 billion (approximately £270 billion) in unpaid labor annually.

Yet counterexamples exist to raise questions about this book’s insistence, in its more unrestrained moments, on championing eros as a possible panacea. The anti-psychiatry movement, which Morris overlooks, would seem to embody many of the characteristics of medical eros. For all the necessary reforms that it has lead to, it has arguably been too successful in undermining biomedical treatments for psychiatric ailments. While the dismantling of mental health care results more directly from draconian cuts to funding than from this particular movement, the U.S. continues to live with the legacy of an impaired system of psychiatric care. That said, Morris anticipates an objection such as this by advocating for a balance between eros and logos. His goal, as he states it, is for biomedicine “to recognize eros and to deal with it—the good and the ill—mindfully” (13).

The principal testament to eros that Morris offers may ultimately be the fact that he managed to write this book. While caring for Ruth, Morris admits to feeling drained of his normal passion for writing: “I could write, but writing lacked all pleasure, joy, and desire” (251). As the examples curated by Morris attest to again and again, illness throws eros into disarray. One of the more telling instances in the book involves the poet Jane Kenyon, suffering from end-stage leukemia, who is reminded by her husband that the bed she lies on is the same site of their countless sessions of lovemaking over the years. This is the type of recognition that Morris prescribes, an awareness of how a bed, as object and symbol, stands for the underlying bridge between eros and illness. The challenge of the latter consists of finding new ways to realize the former. The strength of Eros and Illness resides in how Morris models the counteracting of illness by eros through his writing, eloquently giving voice to Ruth, who lost hers, and rediscovering his own in turn.

Book Review: Notes From the Sick Room

9 May, 17 | by amcfarlane

Notes from the Sick Room by Steve Finbow, London: Repeater Books, 2017, 343 pages, £8.99.

Reviewed by Alan Radley, Emeritus Professor of Social Psychology, Loughborough University

This is a book about sickness, more specifically about the illnesses of a number of well-known artists and philosophers. It is also about the illness history of the book’s author, Steve Finbow. He uses his own experiences of illness (and they are many and varied) to introduce the reader to the travails and writings of the individuals whose sickness he explores. The word ‘travails’ is apposite here as it suggests that illness can be, if not a life’s work, then a determining factor in how people live their lives, as well as rendering their experience meaningful through writing and other forms of art. Key to this is the idea that being trapped in a diseased body opens up the possibility of escape through self-examination, issuing in a productive outcome. To make this argument Finbow explores in detail the circumstances and reflections upon illness of several artists and writers. He introduces us to cancer in the life and death of people such as J G Ballard, Iain Banks, Christopher Hitchens and John Diamond. Finbow details the sufferings of Frida Kahlo after the bus crash that severely damaged her pelvis; the effects of being shot upon Andy Warhol and his art; the denials of illness that were part of Bruce Chatwin’s extensive travelling; and the descriptions of and insights into illness offered by writers such as Katharine Mansfield and Virginia Woolf.

How should one tackle a subject like sickness while providing detailed biographical detail about one’s own and others’ illness, at the same time weaving a complex argument drawing upon philosophers such as Nietzsche and Foucault? Finbow achieves this by treating the book as a virtual hospital – a clinical space – populated by celebrity patients and some celebrity doctors (e.g. Susan Sontag). The entries and exits from the various departments to which he escorts the reader are managed in part by introducing us (in detail) to his own medical history. These extend from a pain in the buttock to severe pancreatic necrosis and a spell in intensive care, all illuminated by details from his medical notes. In the case of the pain in the buttock, Finbow uses this as an approach to the question of whether cancer is alien to or part of the self and, in the case of the latter, how it might become so. Turning on the issue of denial, he argues that the denial of disease (“flight to sanity”) is not healthy, but that health tolerates disintegration and, by implication, transforms it through art and writing.

The idea that illness and the state of being sick can be the bases of productive art is expressed in a quote that Finbow provides, in which John Berger says of Frida Kahlo: “The capacity to feel pain is, her art laments, the first condition of being sentient. The sensitivity of her own mutilated body made her aware of the skin of everything alive – trees, fruit, water, birds, and, naturally, other women and men. And so, in painting her own image, as if on her skin, she speaks of the whole sentient world” (322). By drawing attention to this Finbow is agreeing with Nietzsche and Foucault that art is an act of freedom-making borne of suffering. This extends to the person’s life – including their art – so that what is rendered is expressive of a way of being rather than illness per se. It is perhaps for this reason that he objects to Susan Sontag’s attack on the use of metaphor as aestheticizing the “what should not be imagined”  – the abhorrent disease that is cancer. To this Finbow replies, “what nonsense”, and argues that when Sontag wrote about cancer in her book Illness as Metaphor (1978) she was, in effect, aestheticizing it.

The problem here is that there is a difference to be made between aesthetics and aestheticization. Aestheticizing, at its root, directs the viewer/reader to the artist/author rather than the object. An artwork is the product of a transformation that directs our attention to the ineffable; it is this that, in part, gives it aesthetic value. This is not always an easy line to draw, but it matters in this book because Finbow treats of both aesthetics and aestheticization in the course of his descriptions and discussions. By dramatising the artists and writers he discusses as either patients or doctors, Finbow risks muddling this distinction. So, for example, he writes: “Dr Sontag sits back in her chair, her fingers pyramided above the desk, the silver streak (poliosis) in her hair illuminated by the overhead fluorescent strip lights”. And later, “She closes the book, gets up, takes me by the crook of the arm and says authoritatively, ‘Let’s go to your office. I think we need to have a little chat’” (300). For this reader at least, these passages had the effect of displacing attention from the book’s argument about illness to the author’s interest in his subject matter, which at times I found unhelpful.

In terms of the book’s overall aim Finbow goes some way to demonstrating that illness improves the work of the artists considered, though he does not show exactly how art draws upon illness. Instead, the book remains a bricolage of ideas that coheres as a sort of image, a story of the necessity of ill health in our lives. Its overall message – drawn from Nietzsche – that life needs illness, is incomplete without it, is an important one. Health is not separate from illness, and a deeper understanding of health includes the idea that it can be strengthened by illness. And for that, and its historical and biographical detail, Notes from the Sick Room makes for a most useful and interesting read.

Alan Radley is the author of Works of Illness: Narrative, Picturing and the Social Response to Serious Disease. Ashby-de-la-Zouch: InkerMen Press, 2009.

Book Review: Deleuze and Baudrillard: From Cyberpunk to Biopunk

25 Apr, 17 | by amcfarlane

Deleuze and Baudrillard: From Cyberpunk to Biopunk by Sean McQueen, Edinburgh: Edinburgh University Press, 2016, 288 pages, £70.

Reviewed by Dr Anna McFarlane (University of Glasgow)

Sean McQueen’s first monograph ambitiously aims to create “a cognitive mapping of the transition from late capitalism to biocapitalism” (1) and to do this through tracing trends in science fiction from the cyberpunk movement of the 1980s and early 90s through to a subgenre only recently designated as ‘biopunk’. Following Fredric Jameson, a scholar known for his analysis of postmodernism and Marxism in late capitalism, McQueen argues that cyberpunk is the quintessential literature of late capitalism and therefore a fitting place to begin his analysis of this recent cultural movement from late capitalism to biocapitalism which, McQueen argues, “is the frontline of capitalism today, promising to enrich and prolong our lives, whilst threatening to extend capitalism’s capacity to command our hearts and minds” (1-2).  In McQueen’s schema this is a transition from the ‘control’ of late capitalism to the ‘contagion’ of a biocapitalism that he argues is an increasing threat to individuality and the autonomy of the body.

The book’s title belies its contents to some extent, given that the first half of the book does not focus on texts from cyberpunk’s ‘canon’, such as it is, but focuses on the ‘cyber-‘ aspect of cyberpunk to investigate texts that engage with the concept of control. Anthony Burgess’s A Clockwork Orange (1962) is not generally considered cyberpunk-proper in reviews of the genre, but its themes of control, and of the renegade individual fighting subjection by the state, certainly resonate with the work of figures in the cyberpunk canon such as William Gibson and Pat Cadigan. Another of McQueen’s chosen texts, JG Ballard’s novel Crash (1973), has been subject to debate about the extent to which it can be considered science fiction, let alone cyberpunk. Such deviations from the ostensible theme may be traces of the monograph’s origins as McQueen’s PhD thesis, but their reworking in this monograph is satisfying for those coming to the book for considerations of Deleuzian and Baudrillardian thought, who might consider the texts to which their philosophies are applied a secondary consideration. McQueen successfully cuts through the archaeology of decades of readings and misreadings of these two thinkers, often with a sharp word for scholars who come to the original philosophy with their own preconceptions, and hence leave it repeating unjustified or inconsistent critiques of these two thinkers. His own readings come across as fresh and new, perhaps because he works against a backdrop of scholars who have become too accustomed to invoking the names of Deleuze and Baudrillard without putting in the time to tackle their complex bodies of work first-hand.

The primary interest in the book for scholars of the medical humanities comes in the latter half, where McQueen turns to biopunk. This is a relatively new term in science fiction scholarship (following in the -punk traditions of cyberpunk, steampunk, and dieselpunk, to name but a few), but McQueen finds the term’s origins in classic science fiction, such as Mary Shelley’s Frankenstein (1818, commonly considered science fiction’s foundational text) and HG Wells’s The Island of Dr Moreau (1896). The first example of contemporary biopunk McQueen draws upon is Vincenzo Natali’s 2009 film Splice, in which a couple who work for a pharmaceutical company use DNA to create a hybrid creature.

The film draws on the tradition of Frankenstein to express fears of uncontrollable technological change, while also specifically critiquing a biocapitalism guided primarily by profit margins, rather than by philosophical or ethical considerations about the effects of its research.

McQueen’s readings of Deleuze and Baudrillard focus on some of these thinkers’ key concepts, how these have been relevant to cyberpunk and its investigation of ‘control’, and how they might function in contemporary debates about the ‘contagion’ that McQueen finds characteristic of biopunk. He contrasts Deleuze’s concept of the ‘body without organs’ with Slavoj Žižek’s ‘organs without a body’, both of which attempt to offer a representation of desire without the restrictions of hierarchy (to draw on only one valency discussed in the book). Žižek provides something of a bridge between Deleuze and Baudrillard here, as his Lacanian impulses are echoed in Baudrillard’s attempts to consider psychoanalysis, and how it might function in a society defined by the imaginary realm of consumption and consumer fetishism. Under biocapitalism, the consumption impulse could quickly move towards the point where the market’s freedom to use cells and discarded bodily tissue for profit is in tension with the long-held belief that it is immoral to profit from the cells of organs – as argued by Marlon Rachquel Moore in a recent article for BMJ Medical Humanities, “Opposed to the being of Henrietta: bioslavery, pop culture and the third life of HeLa cells”, which teases out the historical racial injustice that is now being relived, without hope of reparations, by the family of Henrietta Lacks whose ‘immortal’ cells continue to be the basis for untold profit in the biotechnology industry. The move from co-opting the labour of classes of the population under slavery, and later forms of capitalism, to co-opting the use-value of the body itself is the journey with which McQueen engages here as he moves from readings of Karl Čapek’s R.U.R. (Rossum’s Universal Robots) (1921), the science fiction play that brought the word ‘robot’ into English usage, and Eric Garcia’s The Repossession Mambo (2009, filmed in 2010 as Repo Men) which sees a biounderclass fitted out with artificial organs and forced to pay crippling interest rates or face having their organs repossessed – and dying in the process.

The electronic copy of this book, from which I reviewed, leaves something to be desired. Like many academic books, it uses endnotes which cannot be easily referenced as one reads in the electronic form, and the book’s use of abbreviations for the major works of Deleuze and Baudrillard exacerbate this problem as the reference list at the beginning of the book cannot be easily consulted. This makes for particular difficulties when quotes from the major texts are picked out as introductory to chapters and their sections, leaving the reader occasionally unsure as to which of the theorists is being quoted. However, the content of the book ultimately extends the case for considering biopunk as a unique and important subgenre of science fiction that, in turn, deals with the unique and important development of biocapitalism. McQueen’s readings of Baudrillard and Deleuze manage to scrape away some of the sedimented assumptions and misreadings of the past and offer exciting new ways to consider their work. His reference to both major and minor texts from both thinkers will introduce readers to insights they had not previously considered – again, especially relevant to students of the medical humanities might be Baudrillard’s comparison between cancer and capitalism in The Transparency of Evil (1990), the biopolitics of organ transplantation in Kazuo Ishiguro’s Never Let Me Go (2005), or Thierry Bardini’s account of subjectivity after bioengineering, Junkware, which McQueen turns to in his final chapter reading of Brandon Cronenberg’s Antiviral (2012).

As I pointed out above, McQueen’s book does not always stick to the limits laid out in his title, (for example when he reads texts that are not considered archetypically ‘cyberpunk’ under that rubric, or in the latter half of the monograph where Foucault’s thought is just as crucial to his argument as that of either Deleuze or Baudrillard), and his book should come with a warning for those who have never tackled Deleuze or Baudrillard before, given the slew of concepts that are not fully unpacked here for beginners. However, the book that emerges is cohesive and amounts to an often passionate argument for considering class consciousness in the era of bioengineering, biohacking, and biopolitics.

Book Review: The Mystery of Being Human

10 Mar, 17 | by cquigley

 

Raymond Tallis, The Mystery of Being Human: God, Freedom and the NHS. Notting Hill Editions, 2016.

 

Reviewed by Dr Sara Booth

 

This collection of essays – lucid, varied, compelling – is by retired academic geriatrician and neuroscientist Professor Raymond Tallis. A man who may truly be called a polymath, he is not the sort to skulk in a library and never publish anything until it is so perfectly honed that all the life is drained out of his thoughts. Tallis has written and published widely on subjects as diverse as post-structuralism (a critique), artificial intelligence, and the importance of philosophy (defending it against attacks from Stephen Hawking), including a book on Parmenides, a pre-socratic philosopher of whose written work only minute fragments survive.

There are six essays in this beautifully bound edition which, complete with page marker and linen cover, is a pleasure to handle as well as to read. The  subjects of this book, true to form, range widely, thus fulfilling the promise of its subtitle ‘God, Freedom and the NHS.’

In the preface, Tallis defends the brevity and compression of the essay, a form rare in the modern written media, except perhaps the London Review of Books or The New Yorker. He describes the essay as ‘a mind-portable form’, implying that it fits well with the interrupted nature of most people’s attention to their reading. Tallis believes that the essay is the best vehicle to express his well established humanism, self-defined as ‘secular humanism’, and his preferred philosophical stance on life, death and humanity since his teenage years.

Tallis defines this book as mainly a philosophical treatise, whilst he accepts, as I see it, that many will find his essay on the privatisation of the health service political. It is a most heartfelt essay, concerned with the tragic dismantling of the NHS by a ‘cynically corrupt political class.’ The book itself is dedicated to members of Stockport NHS Watch, with whom Tallis was moved to leave the library and to protest in the streets, and experience that he found difficult yet exhilarating.

In Lord Howe’s Wicked Dream, also the longest essay in the book, Tallis excoriates successive Secretaries of State for Health, saving his strongest contempt for Jeremy Hunt. In the short time since this book was published, there have been the strongest signals yet that the service is crumbling away under strains (ageing population with multi-morbidities and little attention to preventative health maintenance) that have been obvious albeit ignored for decades, and those heaped on the NHS by whatever the political equivalent of iatrogenic illness is: Hunt, for example, ramping up individuals’ expectations of what they should demand of the health service, demeaning those who work for it, reducing funding in real terms, and bringing in private companies to profit from the easy work. The Health Service is the most obvious example of the widening gulf between political rhetoric and lived reality, and illustrates the crude attempts to bring critics of (successive) government’s health policy into disrepute. Tallis’s essay is a powerful cri de coeur marred only, in my eyes, by the use of the term ‘swivel-eyed’ which always conjures up the clever, arrogant sixth former to me. It is now a hackneyed phrase which should be jettisoned. Otherwise, all too plainly, what Tallis has predicted is clearly coming to pass and his systematic destruction of the ‘alternative facts’ peddled by the government is cogent and impressive. It is wonderful that so many people give so many examples of still excellent, humane care in spite of the strains. Mid-Staffs remains a terrible example of what can happen when the wrong incentives narrow targets and ‘punishments’ are applied.

The current mayhem in the NHS and the political reactions on all sides impede any chance of looking constructively at how a ‘free at the point of service’ can be maintained. It is clear that we need also to convince people of the value and impact of looking after themselves by behaving differently and valuing what health they have, as well as looking at taxation. We also need someone in charge at the Department of Health who is interested enough in the Health service, and broad-minded enough to listen,  to understand what the work entails. Jeremy Hunt’s complete ignorance of what the reality of junior doctors’ lives are like, as well as his readiness to misuse statistics, has caused a huge mound of distrust to build between the Department of Health and the clinicians who work within the NHS.

Other essays in the book are more clearly philosophical. Tallis alerts us in the preface that a ‘philosophical novice’ might find his essays ‘demanding’. (Reader, I admit that I did). He has a deep, long-standing interest in time and the need to  ‘engage with physics and…rescue time from its jaws’. He feels that time is far too complicated to be left to those who reduce it to a set of numbers.

Unlike Professor Dawkins, Professor Tallis wants to engage, rather than belittle, those with religious or spiritual beliefs. In a wonderful essay, God and Eternity for Infidels, he concludes that that ‘the challenge of humanism is to retain a numinous sensibility without the continuing support of the idea of God or churches.’ In an equally enjoyable and thoughtful essay sparked by an everyday event On Being Thanked by a Paper Bag, Tallis considers the complexity of human consciousness.

In summary, this is a book that will provoke thought and new ideas in the reader – or at the very least a new way of seeing and thinking about many aspects of our lives. Reading it, you will also probably want to read more of what this thoughtful and humane thinker has to say.

Book Review – A Body of Work: An Anthology of Poetry and Medicine

9 Mar, 17 | by cquigley

Corinna Wagner and Andy Brown (Eds.) A Body of Work. An Anthology of Poetry and Medicine. London, Bloomsbury, 2016, 532 pages

Jack Coulehan, MD, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY 11794 USA

At first glance medicine and poetry seem like strange bedfellows. Yet, consider the fact that medicine has strong roots  in the world of art and symbols, and poetry can often be, as the editors of A Body of Work put it, “the deep music of bodies in pain.”  Because of its brevity and immediacy, poetry occupies a special place in the medical humanities movement, which seeks to explore issues of illness, suffering, and healing through the lenses of literature, history, philosophy, cultural studies, visual arts, and other humanities. In their introduction to A Body of Work, editors Corinna Wagner and Andy Brown ask rhetorically, “Poetry: What Is It Good For?” This brings to mind the famous lines from William Carlos Williams’ late poem “To a greeny asphodel,” “It is difficult to get the news from poems, / yet men die every day / for want of what is found there.”1 Perhaps poetry is like a vitamin, required for human flourishing, if not survival.

Several anthologies of poems about illness, disability, medicine, and healing have appeared in recent years. In addition, anthologies of poems written by doctors, nurses, and other clinicians are available. Does A Body of Work contribute anything  substantially new to this genre? The answer is a resounding Yes. The book’s subtitle, “An Anthology of Poetry and Medicine,” could be loosely applied to the earlier collections, but A Body of Work is the first to take the conjunction “and” quite seriously: not just an anthology of poems with the relevant subject matter, or poems written by medical practitioners, but rather an exploration of the relationship between poems and medical beliefs at the time of their writing.

Wagner and Brown situate poems in historical and cultural context by including excerpts from medical writings of the same period. These allow the reader to understand, at least to some extent, the mindset of the poet and his or her original audience.  Because in each major section, poems and medical texts are arranged chronologically, the reader may also observe how medical understanding of a poem’s subject matter evolved over several centuries.  This contextual approach creates a dialog between poetic and medical expression.

The Body of Work is divided into eight topical chapters: Body as Machine; Nerves, Mind and Brain; Consuming; Illness, Disease and Disability; Treatment; Hospitals, Practitioners and Professionals; Sex, Evolution, Genetics and Reproduction; and Aging and Dying. Within each section, poems are arranged chronologically, as are the excerpts from medical writings that follow. Consider the first chapter, which explores the metaphor of the body as machine. One of the first selections is by an anonymous 19th century poet who wrote:

Observe the wonderful machine,

View its connection with each part,

Thus furnish’d by the hand unseen,

How far surpassing human art! (p. 29)

 

In later poems this Enlightenment metaphor is variously affirmed, transformed, critiqued, and denied. For example, in the mid 19th century, Walt Whitman firmly rejected the mechanical man in “I Sing the Body Electric”: “And if the body were not the Soul, what is the Soul?” and “If anything is sacred, the human body is sacred…” (p. 33) In the early 20th century, D. H. Lawrence extolled the self-healing powers of body and soul, “I am not a mechanism, an assembly of various sections…” ( p.38) By the 21s century, poets were writing  about their bodies with considerable irony, as in Jean Sprackland’s “Supraventricular Tachycardia.” The body is distinctly flesh, but not a machine, “my excitable cells don’t wait for the messenger.” (p. 68)

Similarly, medical elections in this chapter range from Julian Offray de la Mettrie’s explicit Man a Machine (1749) to Varieties of Religious Experience (1902), in which William James argued that such medical materialism is a “too simple-minded system of thought.” (p. 81)

Chapter 2, “Nerves, Mind, and Brain,” the evolution of poetic and medical perspectives on mental and nervous disorders. Take, for example, melancholy. John Keats (1820) spoke in the third person when he described melancholy as a spirit that may fall “sudden from heaven like a weeping cloud” on helpless man. “His soul shall taste the sadness of her might / And be among her cloudy trophies hung.” (p. 88) A century later,  Edward Thomas, internalized melancholy, “What I desired, I knew not, But what e’er my choice / Vain in must be.” (p. 94) However, by the 21st century, poets have begun to assert their determination to fight and win at least small battles over depression, as Jane Kenyon wrote in “Having It Out With Melancholy.” Though “pharmaceutical wonders are at work,” she told her antagonist, “Unholy ghost, / you are certain to come again.” (p. 115) Medical writings from the 18th to early 20th century reflect a dramatic change in beliefs about the etiology of melancholy, from George Cheyne (1733), who claimed the illness was attributable to the damp climate, rich food, and sedentary lifestyle in England, to Sigmund Freud, who explained the disorder in purely psychodynamic terms.

The Body of Work contains countless such resonances between medicine and poetry that, from a medical humanities standpoint, give considerable added value to the more than 300 fine poems collected within.

However, the book does have one somewhat surprising deficit, given the editors’ avowed intentions. While contemporary poetry is numerically overrepresented (as is appropriate), the most recent medical writings date from 1919, aside from a brief excerpt from William Carlos Williams’ Autobiography (1948). Thus, most of the poems reflect dramatic developments in the understanding of illness that occurred in the last hundred years, while corresponding medical pieces are absent. Certainly William Röentgen’s “On a New Kind of Rays” (1905) and Joseph Lister’s “Illustrations of the Antiseptic Method of Treatment in Surgery” (1867) led to significant advances in the world of medicine, but haven’t similar developments in mid to late 20th century also radically influenced poetry about illness and healing?

Despite this caution, I strongly recommend A Body of Work to anyone interested in poetry about illness, or poetry and medicine, especially students of the health care professions and their teachers.

Book Review: Illness as Many Narratives

7 Mar, 17 | by cquigley

 

Illness as Many Narratives: Arts, Medicine and Culture

by Stella Bolaki. Published by Edinburgh University Press, 2016.

 

Reviewed by Birgit Bunzel Linder

 

Stella Bolaki’s Illness as Many Narratives introduces several instructive case studies that squarely fit into the critical mode of the second wave of the medical humanities. Drawing on diverse arts and media such as photography, film, animation, performance and artist’s books, the author argues for more extensive cross-fertilisation between contemporary arts and media practices and the medical humanities. Bolaki’s various interpretive approaches are offered as tools that aide in strengthening the dialogue between medicine and broader culture.

The concept of the ‘critical’ in the medical humanities has recently been defined as the ‘embrace of new historical, cultural and political perspectives, as well as different questions and methodologies.’ (Whitehead & Woods, 3) It is guided by the question how one might ‘productively rethink the notions of collaboration and interdisciplinarity’. (3) It is exactly this quest for collaboration and interdisciplinarity Bolaki successfully models in her book, thus adding new perspectives and theoretical tools from the arts and media to the illness narratives of the first wave and to the alliance with the social sciences of the second wave.

In the Introduction, Bolaki broadens the scope of narrative to include forms of art and the media that are related to communicating. These ‘emergent narratives’ allow in various forms and structures to tell of the messiness, complexity, plurality, and diversity of illness experiences while at the same time summoning ethical perspectives toward the nexus between individual socio-cultural and medical predicaments. This leads to the core of her argument, namely that ‘[i]t is the active fashioning of tools, this constructive process that draws on different disciplines and perspectives, that I argue should be at the heart of the critical medical humanities.’ (12) Ideally, this set of critical tools proliferates mutual interplays between the arts/media and the medical humanities, a ‘critical interloping’ (13) that decenters the literary narrative form in favor of collaborative and interdisciplinary representations.

In the chapters that follow, Bolaki introduces a variety of emergent illness narratives. She begins with two very dissimilar photographic representations of breast cancer, The Picture of Health? (1985) by Jo Spence, and Self Portrait in a Single Breasted Suit With Hare (2001) by Sam Taylor-Wood. The two photographic forms of exposure—one revealing and one concealing—are remarkable examples of how word and image together mediate the illness experience. Verbal aides, such as captions, interpretations, photo essays, other fragmented texts, and the integration of various cultural theories provide intimate and authentic witnessing of personalized experiences that influence public perceptions of breast cancer differently than either ways of communicating could do separately.

Martha Hall’s artist’s books chronicle her experience with breast cancer and her receding life. Artist’s books are primarily anti-establishment works of conceptual art that use and deconstruct the form of the book, making art accessible to the wider community. Hall uses paper sculpturing, unusual binding structures, and various crafts to translate her illness experience into viewable and touchable objects that draw the ‘reader’ into a participatory experience. Artist’s books have an advantage over literary texts because the non-diagnostic participatory touch establishes a clear association between ill body and illness narrative and invites individualized ethical considerations.

The Chicano performance artist Guillermo Gómez-Peña challenges cultural perceptions of the ill body and represents his own experience with liver and infectious disease. His performances connect the individual experience with and within society, and, as a pedagogical strategy, widens the gaze from the isolated ill body to its network of (cross)-cultural practices. Gómez-Peña performs two perspectives: the culture-bound medical view of the body and the body’s view of culture-bound medicine.

Nick’s Film/Lightning over Water (1979) by Wim Wenders records the last few weeks of Wenders’ friend Nicholas Ray who is dying of lung cancer. The film portrays the messiness, helplessness, and failures that arise from exploiting someone’s dying experience artistically. The film form makes visible the very unspeakability of death, and chronicles a shared experience that effects an immediacy of experience and poses unanswered questions. Perhaps the most therapeutic aspect of this palliative project to all involved is that in chronicling his own dying, Nick’s legacy survives through the film.

The experimental and autobiographical theater “Well” (2004) by Lisa Kron is a relational narrative of Ann Kron and her mother regarding their different therapeutic approaches to chronic fatigue syndrome and allergies. Through a radical change in lifestyle, the daughter’s story leads to healing, while the mother opts for medical treatment, yet cannot escape her illness. The play prepares for a realistic clinical uncertainty that is not just determined by medical limitations but also by different individual responses to illnesses and treatments.

Finally, a set of six collaborative online animation films called Animated Minds (2003) each address a mental disorder. While he patient’s voice-over narrates his or her experience, there is a collaborative effort in animation, coloring, and music. This form of collaborative artistic expression is particularly striking, and much of what remains unspeakable in the written word becomes speakable in animation and therefore counteracts isolation and stigma. Fish on a Hook impressed me the most. The very respectful, empathic yet matter-of-fact voice-over draws the audience into an alternative world (or what Bolaki calls ‘alternative knowledges’) of a mental disorder (agoraphobia and panic attacks) that might otherwise remain inexplicable. If the strength of Wenders’ film lies in its immediacy of experience, the relative anonymities in Animated Minds (and in particular Fish on a Hook) succeeds in a kind of distancing that allows critical and unencumbered engagement. It enables different dialogues about lived experiences that also include fear, resistance, loss, helplessness and the social context that define these.

Bolaki’s examples reveal several commonalities. All of them display a complexity and authenticity of experience, and result in productive learning from disorderliness and failures of representation that challenge previous discourses of mastery. In these examples, we can see what we already know but often ignore: that no patient’s illness experience happens in a vacuum, or, perhaps even more importantly, within a medical bubble. The deconstruction of art forms through messiness and fragmentation are a ‘body speak’: they mirror the ill body’s deconstruction and disintegration. Moreover, the artistic forms are of great importance because they are related to questions of ethics and politics that explore the many ‘metastasised’ conflicts around illness. The communicative acts are tightly bound to the question of ‘how to live (or die)’ and especially how to be perceived rather than merely how to be healed.

Although it has become a truism that a patient is more than his/her body or illness, each project Bolaki selected for her book, strongly foregrounds the mind and creativity of the artist and presents the patient (perhaps for some uncomfortably so) as a complex, lively, and creative being. Although the artists and performers deal with death and disorders, they leave a legacy that lives on. Combined with collaboration and public access, the suffering artist-patients nevertheless generate projects that are giving, instructive, tangible, and inspirational, and succeed in blending artful expression and poignant meaning. Perhaps herein also lies the difference between the first wave of medical humanities and the second wave: the former engages in listening and proxy-experiences, while the latter engages in participation and witnessing. This seems to be a logical next step.

What then about those who remain silent, those who don’t want to tell their stories, or those who cannot identify with the narratives already told? To re-phrase Tolstoy, ‘All healthy people are alike; each ill person is ill in his or her own way.’ How can the medical humanities represent the silence that is probably inhabited by the clear majority of those suffering from illnesses? Bolaki’s Illness as Many Narratives importantly reminds us that the content of the narratives might not represent everyone’s experience, but that the need to communicate one’s suffering is universal.

A very minor criticism of the book is that Bolaki assumes familiarity with the chosen materials. Her analyses are comprehensive and convincing, but it would have been good to have a general introduction to each project under discussion. I also felt that her diligent defense of emergent narratives might be preaching to the converted in literary circles, especially since she clearly and convincingly works out what her emergent narratives can do better than other word-based narratives: they solicit dialogues and shape perceptions in a much more public and political way.

Throughout her book, Bolaki underscores—by way of aesthetic, ethical, pedagogical political, and collaborative methods (tools)—the notion of narrative as telling in many forms, forms that favour expressive and evocative representations rather than linear story-telling. The photography, artists’ books, performance art, film, theatre and animation Bolaki introduces in her book reject the ‘cultural narrative of triumph’ (64) and invite instead critical interloping and inter-disciplinary dialogue. Bolaki’s Illness as Many Narratives is an intelligent and illuminating contribution to the field. A short review like this can in no way do justice to the book’s sagacity and importance.

 

Whitehead, A., and A.Woods, eds.  Atkinson, S., Macnaughton, J., and J Richrds, assoc. eds. (2016). The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press.

 

Book Review: True Tales of Organisational Life

6 Feb, 17 | by cquigley

 

True Tales of Organisational Life

Barbara-Anne Wren

Karnac Books Ltd, 2016

ISBN-13: 978-1-78220-189-2

 

Reviewed by Dr Andrew Schuman

 

It’s stories, the psychologist Barbara-Anne Wren reminds us, “that will hold us when nothing else can”. They are humankind’s most effective way of making sense of the world – of organising and giving “a shape to experience”.

The organisation in question, both in the title and at the heart of the book, is the National Health Service (NHS): a gargantuan body employing around two million people. The individuals, working within the service in these straitened times, are facing unprecedented challenges. Relentless waves of financial cuts, along with breathtakingly costly systems of regulation and inspection, have left a workforce more disillusioned and more demoralised than ever before.

Wren’s work as a psychologist and organisational consultant, in a busy London teaching hospital over the past seven years, has been ground-breaking. Rather than seeking the impossible, of  “banishing” emotion and distress at an individual level, her remit has been to “manage meaning and complexity, understand emotional life at both an organisational and individual level, and create spaces in which the unique challenges of healthcare work could be observed and understood.” Some remit.

The strength of Wren’s book lies in her first-hand account of setting up this therapeutic space – in the form of Schwartz Rounds. Originating in America, they consist of a monthly meeting of health professionals, in a forum that is non-hierarchical and deliberately organisation-wide. Their primary focus is on the human dimensions of providing care. Rather than chasing action-points and outcomes, the emphasis in these meetings is on quiet reflection and stillness – storytelling without a means or an end, where “rational and emotional experience have equal permission to emerge”.

At their core is the work of Kenneth Schwartz, a US lawyer, who died of lung cancer in his forties. His own story of diagnosis and treatment was, he writes, “punctuated by moments of exquisite compassion”, [that] “made the unbearable bearable”.  The article he wrote, shortly before he died, serves as a rallying-call:

I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rule-books, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them…

Our response to his plea must be to support and enable those working in the front-line of the health service – and to encourage and inspire a greater emotional engagement with our patients. As Wren reminds us, psychology’s modus operandi is in “relationship”: “it is dynamic… It works because it moves.”

The protected time and head space of the Schwartz Round give participants permission to open up about the very things that really move them – “what they were proud of, exhausted from”, but also “what saddened and puzzled, infuriated and frightened, humbled and inspired them.”

Two-thirds of the way through the book, we get to its raison d’etre: a collection of seven stories, garnered from the many Schwartz Rounds that Wren has facilitated. These “true tales” (of the title) illustrate the limitless ways in which a particular story is able to “move”, in all senses of the word. They tell a tale, but they show us a greater truth: that stories “will hold us when nothing else can”. With their beginnings, middles and ends, they can bring order and sense – and “sustain us”. Some of the stories arise from clinical issues, others from tensions that can occur between our personal and professional lives; still more concern conflicts at an organisational level.

One of them concerns a “macho” transplant surgeon, who needed to travel to another hospital in order to harvest an organ, before returning gung-ho, aware only of “the happy anticipation of the expectant, hopeful patient” whose life he would be saving – and “ready to demonstrate his skill and authority”. As the successful retrieval surgery came to an end, and the surgical drapes were removed, there was a rustle of paper below the body of the child donating the organs – and a teddy bear tumbled to the floor. The teddy bear was the very first thing the child had been given when he was born; the paper some pages on which family members had imprinted their hands, so that the child would die “in their arms”.

As soon as this was explained to the transplant surgeon, “a ring of steel around his emotions was broken”. By the time of the Schwartz round, the surgeon succeeded (only just) in “gather[ing] up all his energy”, and recounted his experience – including the detail of the teddy bear.

Reading this stopped me short. It also brought to mind the words of the American writer, Maya Angelou: “There is no greater agony than bearing an untold story inside you”. The surgeon’s burden had been made lighter by the telling of his tale, while those listening, bearers of this confessional, could respond only with silence.

Wren unpacks each of the stories she gives us – in this particular case, reflecting on the challenge for clinicians of balancing feelings of sadness and grief with “the business of living”. We need to know, in order to function for the good of all of our patients, when to block each of them out. Both feelings are, of course, essential.

Another tale looks at the case of an abusive patient – but from the perspective of the staff looking after her. As Wren points out, the focus of the Schwartz Round is more on effects than causes: here, the focus was on the impact of the abuse on the individual staff members, and the “reality of what they have to withstand”. Faced with this situation, we can sometimes summon up compassion and creativity; at other times, we’re all too aware of the limits of our compassion. But Wren gets the participants to “question the balance between what is being required of them, what they have left to give, and the containment and support they are being offered” – while appreciating, and exploring, the ways within the group of dealing with such abuse.

The book is not without faults. The editing could have been a little tighter. At times, Wren’s prose tends towards the mystical. Elsewhere, her generalisations can seem weak. “Everyone”, she tells us, “wants to be a psychologist, or is one, or knows one”. Her statement, that patients in hospital “[a]ll have families who want them back” seems, sadly, a tall tale.

But True Tales is good on the practicalities of voicing disharmony in the workplace, and of seeking ways to resolve these conflicts through the timeless alchemy of stories and story telling. “Ever since we were little, the stories have kept the darkness at bay. That and each other will get us through.”

 

Dr Andrew Schuman

Dr Kenyon & Partners,

19 Beaumont St., Oxford, OX1 2NA

 

andrewschuman@doctors.org.uk

 

 

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